A methodological approach in patient insights to discover the emotional patient journey

When patients are diagnosed with a disease, they embark on a journey that is an emotional rollercoaster. From even before the initial diagnosis, through to treatment and beyond, patients experience a wide range of emotions that can be difficult to process.

It is essential to understand this emotional patient journey because doing so can greatly impact the patient's overall health outcomes and quality of life. When we understand their journey fully, we can develop better support systems and deliver better care to help them through their reality.

Embedding patient emotions within the research

When it comes to patient research, two indicators have been studied thoroughly to date: patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs).

While both PROMs and PREMs have at times been used to complement clinical indicators, the latter presents some challenges in terms of full incorporation into healthcare protocols. PREMs are extremely important, however, as they provide us with valuable information, such as patient insights (retrospective data) and patient intelligence (prospective data). Such data can and should be used to inform how patients facing serious health diagnoses can be supported most effectively.

The incorporation of emotional indicators into healthcare processes is an area that is yet to be fully explored. As a result, we believe the patient journey cannot be studied comprehensively. In order to be able to do so in the future, we must devise a methodological approach to uncovering the full extent of the emotional patient journey. A patient journey map is a useful tool to understand patient insights, for example, but fundamentally we need to go beyond clinical indicators and integrate emotional indicators too.

A new approach to researching patient emotions: A case study

In a recent collaboration with the patient research company Patient Intelligence Panel/PIPHealth, Amgen Netherlands researched the emotional patient journey of those living with Multiple Myeloma, a type of blood cancer. While the full results of the research are yet to be published, it was discovered that uncertainty and trust were the two leading emotions experienced throughout the journey of those patients who were surveyed.

In this case, 'uncertainty' reflects the feeling that, at any time, their M-protein count could go up, and therefore never experiencing a moment of complete assurance. And by ‘trust’ the respondents referred to the trust they felt in the healthcare professionals - trust that they were completely supportive partners, serving the best interests of those patients through this key stage of their personal life journey.

These outcomes vary from the findings of other studies conducted about the emotions of patients with different cancer types. For example, in a study with women diagnosed with breast cancer, it was found that ‘hope’ after treatment phases was the dominant emotion. As such, this new study highlights the importance of understanding patients' emotional journeys and the impact that it has on their overall wellbeing.

A formal methodology

To uncover the emotional patient journey, one-on-one interviews were conducted to establish dominant themes in each phase of the disease. The phases refer to the following stages: pre-diagnosis (i.e., experiencing symptoms and undergoing diagnostic testing); pre-treatment (diagnosis); treatment; and post-treatment (i.e., living after treatment; potential relapse). Further, the post-treatment phase can also include undergoing a new treatment or living with the disease.

It is essential to capture patients' emotions and experiences in each of these phases to obtain a truly holistic understanding of the emotional journey of the patient. During each of these phases, the patients may experience a variety of emotions that can vary from person to person, but which, when put through statistical testing, could indicate common denominators. These can then be used to guide providers in offering the best support possible at each phase.

To test the themes and emotions statistically per phase, an online quantitative study was conducted.

Why understanding the patient's emotional experience matters

That recent study measured the level of shared emotional experiences expressed by patients completing the online survey, thereby giving healthcare professionals and providers such as pharmaceutical and biotechnology companies a better understanding of patients' emotional journeys. By understanding the emotional patient journey, they can in turn tailor their approach to provide better care and support to patients.

In conclusion, uncovering the emotional patient journey is crucial to improving the overall quality of care and health outcomes for patients. Healthcare professionals and providers like (bio)pharmaceutical companies need to go beyond the clinical indicators and incorporate emotional indicators alongside these more traditional measures to better understand patients' experiences.

The best way to do so is with a methodological approach. Once we are empowered with meaningful data on patient insights and patient intelligence, we can provide better support to patients, improve their overall well-being, and enhance their quality of life. Let us get it done together.

About the authors

Frank van der Helm is a marketing manager in haematology at Amgen Netherlands. He is a well-established healthcare marketeer with experiences working for multiple pharmaceutical and biotech companies for over 10 years. He is currently working in the fields of haematology and oncology, with a steady focus on patient value and improving the Dutch healthcare services through his work.

Nadine van Dongen is managing director of the Patient Intelligence Panel, an online international patient platform that aims to give patients a voice in healthcare. Dongen has collaborated with patient advocacy groups such as the Child Growth Foundation, Diabetes UK, Women’s Health Concern, the Cure Parkinson’s Trust, National Rheumatic Arthritis Care society, and many more. In 2023, she founded a new health tech start-up accelerating patient engagement by streamlining compliance in patient market research, via a single secure platform for health communication and PR agencies.